Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.

IZEA

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Wednesday, September 22, 2010

Oops, I did it again! I let too much time go between updates. Once again, too many things happening at once. I got my wheelchair back on a Friday, and had the technician come the following Monday to adjust the footrest and headrest, which were out of whack. And, then, luckily, the next day-- Tuesday -- the loan closet was able to pick up the loaner and I was able to make room in the apartment again. Sounds perfect, right? The day after -- Wednesday -- the wheelchair decides to stop working. The wheelchair company was so upset by this and sent the technician out yet again. It was the old problem of the wheel slipping from "Drive" into "Push" but this time, we couldn't get it to go again. The tech said we might have to do it more than once and then give the wheelchair a little shake. It worked and it has worked ever since -- thank goodness!! Oh, and the bed is repaired. It needed a new motor too. I don't know what it is with me and motors, but I wanted to call in an exorcist. I really felt like I would lose my sanity -- the little that I have left, that is.

Now, to the Muscular Dystrophy Association [MDA] and the Annual Jerry Lewis Labor Day Telethon. I went to the studio and was told I would receive the Personal Achievement Award and an "interview". Now I bet you're asking "How does a person who doesn't speak, do an interview?" Easy. You get the questions in advance, formulate the answers on the Speaking Device, save them as files named so that you know which file answers which question, and on the day of the interview, hopefully you push the right answer to the right question. I was paranoid about this. There were four questions and so I had four files saved and when I got the question, I would open the file and the machine would speak the response. I practiced several times to make sure the answers were still there. When I went in front of the camera, it was even easier, because the Telethon was running behind, so we only had time for two questions and answers. Everybody told me I looked beautiful [liars!] and I did well [not as much of a lie].

It was more thrilling than I expected, because I saw up close some of the performers who were "legends of rock and roll". Remember that scene from the movie "Rainman", when Dustin Hoffman repeated a promo line from a radio station "WXXX, the legends of rock and roll...." ad nauseum? Well I got to see Ronnie Spector, Connie Francis, Tommy James [without the Shondelles] and Gene Cornish of the Young Rascals up close. And, of course Tony Orlando, who made me want to "tie a yellow ribbon round the old oak tree" and "knock three times". He looked great, and his songs remind me of college, because they were on the radio during my college days, and Tony Orlando and Dawn had a summer variety show on TV [remember variety shows?] And if you don't recognize these names, then you are under 50. Okay, so it wasn't Justin Bieber or Beyonce.

Now a word about the inspiration I felt. A lot of disrespect has been paid the Telethon recently, and especially Jerry Lewis. Jerry is in his 80s and all his old contemporaries are already gone. Someday, he will be gone too. I read a very snarky article by some idiot in the Washington Post, saying that Jerry is too old, and the Telethon should go the way of the Betamax or word processor. WHAT??? They raised about $58 million this year in the crappiest economy we have had in decades!! And as if the article weren't bad enough, the comments at the end were totally shocking. Comments like "with all the money raised, how come they have no cure yet?" Can you say "Almost 50 diseases"? and wait!! Does cancer have a cure? How many billions have we raised for cancer? And yet, that money has made a world of difference in research for better treatments, and methods of early detection, which leads to prevention and stopping cancer from spreading.

So it is with the MDA. Research has come up with amazingly effective treatments for many of the diseases, and many ways of assuring that people with ALS and the other neuromuscular diseases live longer and more productive lives. That wheelchair and speaking device I have? I wouldn't have them if it weren't for MDA, which helped with the 20% copay that Medicare doesn't cover. My wheelchair cost $25,000 and my speaking device was about $7,000+. Do the math and figure out 20%. How many people have that kind of money, especially those of us who have already used our life-savings for uncovered or undercovered medical costs? And how about the interdisciplinary clinic at Cornell/Hospital for Special Surgery I attend every three months and the support group many of us attend monthly. Those have to be subsidized by money from MDA, which also runs summer camps for children with neuromuscular diseases, and loan closets which lend equipment to patients whose own are in repair.

I agree that someone should probably be standing by to take the helm, just as Ryan Seacrest is doing for Dick Clark's New Years Eve celebration in Times Square. But to say that the MDA Telethon should end because Jerry Lewis is getting old? And to say "with all that money, where's the cure?"? is just pure ignorance and stupidness, as one of my aides calls it. If someone doesn't want to give, it's not like tax dollars. Don't give. And just because you don't like Jerry Lewis and question his motivations, who cares? He is an icon and the Telethon is an icon and a big fundraiser that does a lot of good. If you could have seen the little kids I saw in the green room before the Telethon, and how they made me feel guilty for complaining that I got a disabling disease at 48 years old!! They had great attitudes and their families were just as upbeat. It was the most inspiring event I had the privilege of attending in a long, long time!!